Ethical Will

While in class on Saturday I thought deeply about how an ethical will can affect those left behind. I thought of it not for those I leave behind but me being the person left. As all of you have read my mother has been ill for some time. You can not help but to think of her death everyday and many times each day. I have attempted to get her to talk about her death with no success. I don't think she is afraid of dying but just not sure. She is a very devout Catholic and believes in the after life. She has talked about seeing her own mother and many others when she does die but that is all she talks about. We can not get her to make any plans much less write an ethical will. Oh how I would love for her to do so but I really think it would be difficult for her. I do not think I could approach the subject with her only because I do not want her to think I am ready for her to go. I guess this is one reason I do not bring up death to her very often. I do not want her to question why I want to discuss death with her. Mom fights for her life every day and every minute of the day. I do not want her to think I have given up on her or want her to die so I will not have to take care of her any more. I want to say I know my mother very well but since she has fallen ill she and I have been spending so much time together that I have learned that I do not know her quite as well I as think. Many of you discussed the fact an ethical will would only be things written that you already know but I assure you all you would be surprised at what is written. I agree a lot of what is written you will know but if someone is serious about writing an ethical will they will be writing down the things they never took the time to say. They will not be writing down the things they repeated their whole life. I am going to attempt to work up the nerve to approach her with this idea. Her hand writing is not very good but she can still type so I am going to really pray about it and see where that leads me.

I know some of you felt like these blogs were just another assignment you had to complete each week. For me it was therapy. I thank you Carol Drolen and Barbara Delisle for this assignment for it helped me work out a lot of feelings I had about my being a caregiver to my mother.

Very Late Adulthood

I have really enjoyed reading and researching late and very late adulthood. It has really helped me to better understand my Mom and Dad's perspective toward life. There are some days when I think I am going to absolutely lose my mind dealing with Mom's illness and my Dad's ways but lately I have been able to look deeper and attempt to see the situation from their perspective instead of mine. This is much easier said than done. I am also realizing how much of what I do today will affect me in late adulthood. I hope to not have any regrets. This is difficult because although I will not have any regrets about taking care of my parents, will I have regrets because I was there and not at home with my husband and son. Today I do not see it as having a choice but how will I view this situation when I am 70. I guess all we can do is our best for now and pray that our daily decisions are the right ones.

Just to change pace a little. Reading both Newman & Newman and Hutchison it is apparent that the quality of life we live in late and very late adulthood is affected by how we live in middle adulthood. Because I am in middle adulthood this really does wake me up. I need to be setting myself up now to live a long healthy and fulfilling life. So what is it that we can do to make sure we are able to do this? My mother, unfortunately, is a prime example. She tells of going to the doctor in her late 40's and early 50's and the doctors telling her that if she would quit smoking now she could reverse some of the damage that is done and she would be able to live a longer and healthier life. She knows that if she had listened to and done what she was told she would probably not be in the situation she is in today. I believe she has come to terms with her choice but it has been a very difficult road. I believe I have said in a past blog that she has even asked me what is it that I did so wrong to deserve this. I again am doing a lot of rambling in my blog but it is so difficult to sort out all the many feelings that I have toward this subject. I believe one day it will all come together and make better sense but today is just not that day.

Euthanasia?

eu·tha·na·sia (yth-nzh)
n.
1. The act or practice of ending the life of an individual suffering from a terminal illness or an incurable condition, as by lethal injection or the suspension of extraordinary medical treatment.
2. A quiet, painless death.

Davey brought this up in the discussion of the video we watched and I thought it would be interesting to hear some of your points of views. I am in Gulf Shores for a conference and I am staying in a condo with several ladies. I explained to them what I was working on and asked their opinion. Boy did this not open a can of worms. Very interesting perspectives. The first lady who spoke said adamantly that she agreed with euthanasia, that it should be our right to die if we chose to. She is someone I just met and is not aware of my mother's situation. I then told her I was on the fence with this subject. She then made the comment that people would do this just to get rid of the old. There has been many times that Mom has asked me or one of the other siblings to just pull the plug. There is no way I could do this. I know my mother is not living a quality of life that she would like to have but it is life. When mother first got sick the doctors asked us if need be did we agree to have her put on a ventilator. We wanted the doctors to be able to tell us whether or not it would be temporary or not. Of course they could not predict the future. Ultimately it was my Mom's decision. The doctors made the decision that she was of her right mind and that the decision was hers. She was desperate for a breath and told them yes. She has asked me on many occasions who made this decision to put me on this machine? This is one time that I lied to my Mom because I told her the doctors did it. Well, my point is, we would have all missed so much if she had not made that decision that day. No, it is not the perfect situation nor is it what we would have chosen but I have never been any closer to my Mom. My relationship with my siblings and father has also grown. My mother has gotten to see two great grandchildren that have been born since the decision. Have we all not made the comment to one of our loved ones, don't let me just lay there and suffer. I know I am a little all over the place with this subject. I guess it is because that is where my thoughts are at. I have a sister that is staying with Mom this week while I am at the conference so I will not be staying with her this week. Although I enjoy the break I really do miss being there. The elderly are such a valuable resource. Amazing how much we can learn. Well, let me know your opinion.

Fear of Loss

I was intrigued by something that Harry said in "The Sum of Us". While laying in bed, completely helpless, Harry thinks out loud that he never worried about getting sick but he did worry about Jeff getting sick and how he would manage to care for him. I know part of his worry was due to the fact his lifestyle put him at additional risk of contracting AIDS but I also believe it was fear of losing his son. My mother has stated on many occasions that her only desire in life was that all her children out live her. I know I do not fear my own death but I do that of my children. It is a selfish fear in that I do no want to suffer through the death of a child. I have seen how devastating it can be for a family and although I have a very supportive family, death of a child would be such a loss. In my experience with my mother she has become accustomed to loss. She has lost so much since becoming ill but she seems to adapt. Like Erikson states it is either integrity and contentment or despair and my mother, like many other people in late adulthood, have chosen integrity and contentment. I do believe if she had to suffer the loss of a child, even though we range from ages 58 to 43, she would be is despair. I do not think it would necessarily be a chose but I do believe it would be more than she could handle. There is a scene in the movie when Harry is going to the bathroom in front of Jeff. I can't remember his exact words but his comment was how he was quite modest about going to the bathroom in front of someone but now it just does not seem to matter. Contentment, he knows it does not matter if he cares, he does not have a chose in the matter. My mother never leaves her room. She has a bed side commode that she uses. It did take her some time before she seemed to not be concerned about who might be in the room when she was sitting on the pot. (her terms) Now she nor any of the family members think anything about it. She had been fighting despair the last couple of weeks. Her living siblings have a reunion each year the third week-end of October. Every year she struggles during this time. The loss of freedom to go when she wants, loss of companionship with her siblings, and just the loss of control over the situation. All of her siblings live out of state so it is difficult. I just pray each day that they realize she can not come to them and they come to see her. I have learned the hard way you can not force someone to do something but I do believe in the power of prayer, so I will keep praying. I don't just pray that they come see her but that they realize what type of condition she is in. I do not think they are realistic in dealing with her condition. I went to a reunion a few years ago and the siblings would come up to me and make the statement that maybe your Mom can come next time. I would try to explain that was not possible but it was like they did not want to hear what I had to say. I eventually gave up. I know I am rambling again but it is hard not to sometimes. I have so many thoughts about this issue that they just seem to get all mixed up sometimes. I really wanted to share more in class on Saturday but event though I have been dealing with this for six years, I still have a hard time speaking out without getting emotional. I am working on it though. Thanks again to all of you who take the time to read my blog and comment.

What's my address?

Went by the courthouse to get my Mom an application to apply for an absentee ballot and brought it to her to complete. Because I know she likes to be able to do things on her own, I just gave her the form and said she needed to complete it so we could get her an absentee ballot. She started completing the form and I realized she looked a little frustrated. She then said, I can't even remember my address or phone number. Don't get me wrong, Mom's mind is really good, she just has had no reason for many years to even know her address and phone number. The both of us just kinda laughed it off but I know if made her feel bad. She completed the form and then said, I guess I could just go and vote on voting day. This woman has not been anywhere but a hospital by ambulance since before December 7, 2003. My brother-in-law fixed a wheelchair for her that holds her ventilator. Just a side note about this. Mom has medicare and GEHA insurance, which is federal government insurance, when we asked the medical supply company to order her a wheelchair that would accommodate her ventilator they sent in the request. They actually sent it in several times and each time it was rejected due to the fact one had already been issued. She has a standard wheelchair that the insurance company approved when she was first released from the hospital. It has no shelf. It would be impossible to take her anywhere in that wheelchair. The ventilator weighs 22lbs. Who could push her and carry the ventilator? Not possible. Anyway, when we realized that they would not approve the expenditure, we obtained an old wheelchair from the local VFW and my brother-in-law modify it to accommodate the ventilator. He had it finished around April of this year. The first week she went outside twice. This was the first time since 2003 that she had been out. She did great and we were all so proud of her. You may need to know that she does not leave her room. She has tried in the past during holidays but every time we get her moved she has a severe anxiety attack. We immediately have to get her back into her room, her place of comfort. We were all so excited when she went outside. We really thought her life would be changing for the better. Unfortunately she had a not so good experience and has only been outside once since April. It was about a month ago. Now she is talking about actually getting into a car and going somewhere. It is possible. We have all the proper equipment, she is just going to have to make up her mind she can do it. Who knows maybe one day. At least it is something for her to look forward to doing. I know this post is a little random but it seems I get my ideas when I come to Mom's and am reminded of the daily battle she faces. Thanks again for all of your comments. My Mom is a remarkable lady.

Loss of Control

If you happened to read my film journal on The Upside of Anger you will know that I felt that much of Terry's anger was due to her loss of control. Unfortunately, I believe this because I get the most angry when I too have lost control. I have been called a control freak in the past. This is something that I have attempted to work on in my life. Instead of admitting that I want control of a situation I use that old expression, if you want something done right do it yourself. I have come to realize that that is not always true. I have learned to let go but only out of necessity. There are only 24 hours in a day and after a period of time I have accepted the fact that part of those hours have to be used for sleeping. Although my mother does not talk about her anger I am sure it is there. The changes that she has had to deal with in her late adulthood are completely out of her control. She has little control over what is happening to her at this point in her life. I am sure my father also feels like he has lost some control over his life also. His life completely revolves around his wife. What is it that keeps us sane during these times? It is the protective factors that keep us from completely losing our mind. The strongest protective factor we have is our family. I have had many professionals make the comment that the care Mother receives from the family is what keeps her alive, not the machines she is connected to. What keeps me most sane as a caregiver is the patient, my Mother. Her strength, her acceptance, her faith, and her belief in me is what keeps me from being angry.

For the reason stated above I believe it is important for social workers to advocate for better care for the elderly. A better support system for those who do not have family to cling to. We need to eliminate the risk factors and build up the protective factors in their lives so they can live the end of thier life with contentment instead of resentment and anger. I have learned that you can not force a family member to care for a member of their family but we can try to find someone or something to take its place.

As in all my blogs I am not sure how much sense this makes to anyone else. It is difficult for me to put into words my feeling and even more difficult to attempt to determine my mother's feelings and put them into words. Again thanks for your comments.

Acceptance - Faith

If you have been following my blog you will know that my mother has been home bound for 5 years and 9 months. For the first few years, can't remember exactly when, my mother thought things would change. She was hopeful that her condition would improve and she would not live confined to her room as she was living. I remember like it was yesterday the day she looked at me and said, "I'm not going to get any better, am I". Although I can not remember the exact day this happened it impacted me deeply. Prior to that day I did not realize that she even thought she would get any better. I thought she understood, like the rest of us, that this was permanent. We all believe in miracles but we also know how to deal with reality, so we accepted that she would be home bound (room bound) when we brought her home from the hospital. What we did not do was explain this to mother. I felt so guilty for having not told her before this point what I already knew about her condition. Her lungs would never be able to repair themselves. The damage was too severe and we knew that without the ventilator she would not be able to take a breath on her own. I got so caught up in my own feelings and what I was experiencing and forgot to ask her what she thought or felt. How selfish of me to not realize what she may have been thinking. After this I have not and will never again assume she knows exactly what is going on with her health. I will tell her exactly what is going on good or bad. Tonight I sit here working on my assignments while also watching my mom enjoy a sugar daddy and reading a book. The look on her face is nothing but contentment. It has taken a lot of time for her to accept the fact this is what the rest of her life will be like. Yes, she still has those days when she will talk about what she wishes she could do but she knows that she can't and accepts life as it is. Several years back I recall her sitting with a friend who was also having health problems. Her friend knew she was developing Alzheimer's and would soon not be able to come and visit. She also knew soon she would be dependent on her family to care for her just as mother has had to become dependent on her family. She looked at mother and said, "Why does God keep us around?". They then both grinned and went on with their conversation, I myself had to leave the room for fear of getting upset in front of them. Although this experience upset me I did realize later that they both had accepted their new place in the world, even though they did not know why. My only explanation for this is Faith. Although she is weak physically I believe her mind, spirit, and soul have never been stronger.